Most people wouldn't feel elated, like I did yesterday, at being told they had arthritis in their upper back and neck - but I certainly did! I thought I'd relate my story here to demonstrate how difficult it is to get the NHS to change its mind - and how wonderful it feels when they do! This is, of course, highly relevant when many of us have diagnoses of fibromyalgia and/or ME/CFS when it could be hypothyroidism. (and, sorry, this is a long post)
For almost 10 years I've been plagued by joint pain which has got progressively more severe - knees, feet/ankles, but mostly in the upper back/neck/shoulder area. It's got to the stage where the upper body pain is almost unbearable, especially at night as I wake in pain regularly. So, around 8 or so years ago, I got referred to a rheumatologist who did the 18 tender point test and told me I had fibromyalgia. At first, I believed him ... but then from talking to people on a fibro forum I realised that my pain didn't sound anything like theirs. I have no burning or tingling sensations and it feels deep within the joints/bones, not muscular.
But, of course, the doctors kept telling me, each time I went to them saying the pain was getting worse: "It's just your fibromyalgia". I even got referred to another rheumatologist recently and was absolutely appalled at her behaviour. I thought she was going to examine my shoulders as I believed that was what the GP had referred me for. Instead, she didn't want to know about my shoulder pain and restricted movement, she simply did the 18 tender point test again. She was quite surprised when only four of the 18 points actually hurt (the four on my shoulders, no less), said to me "Ah, but some people have a high pain threshold", and concluded that I did, indeed, have fibromyalgia. I even got a snooty-sounding letter from her saying that "she hoped that had put my mind at rest"!
Anyway, fast forward to yesterday. My GP surgery has now got a physio attached to the practice. I'd persuaded my GP that I really couldn't cope much longer with this pain and restricted movement in my shoulders, and the fact that it was keeping me awake all the time. After a two month wait, I got the appointment with the physio at the practice yesterday - and she has now confirmed, what I suspected all along, that my shoulder pain, along with upper back and neck pain, is all caused by osteoarthritis of the upper spine/neck. She was quite surprised that I was pleased that she's now given me this official diagnosis. I also now have a diagnosis of OA in my knees and ankles, so now EVERY SINGLE ONE of my pains, which were for so long put down to "just my fibromyalgia", have been explained by OA. I feel totally vindicated!
It just goes to show how important it is to keep chipping away at the medical establishment if we know they've given a wrong diagnosis. I still feel pretty sure I have thyroid and, particularly, adrenal problems. I also have a diagnosis of ME/chronic fatigue going back to the 1990s, and the last couple of years has seen me get all sorts of other symptoms such as swelling, dry skin/eyes/hair, loss of body hair, constipation, etc, all of which point to hypothyroidism. But at least I now know what's causing my severe joint pain - and knowing the correct cause makes me feel so much more able to cope with it!
Keep fighting, folks - it's really worth it!